Medical End-of-Life Decisions for Children in the Netherlands

Department of Public Health, Erasmus MC and Erasmus MC-Sophia, Children's Hospital, University Medical Center Rotterdam, Rotterdam, the Netherlands.
Archives of Pediatrics and Adolescent Medicine (Impact Factor: 5.73). 10/2005; 159(9):802-9. DOI: 10.1001/archpedi.159.9.802
Source: PubMed


Most end-of-life decision-making studies have, until now, involved either the general population or newborn infants.
To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands.
Two studies were performed. The first was a death certificate study in which all 129 physicians reporting the death of a child aged between 1 and 17 years in the period August to December 2001 received a written questionnaire; the second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments.
Some 36% of all deaths of children between the ages of 1 and 17 years during the relevant period were preceded by an end-of-life decision: 12% by a decision to refrain from potentially life-prolonging treatment; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7% by the use of drugs with the explicit intention of hastening death. The latter decision was made at the child's request in 0.7% and at the request of the family in 2% of cases. The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all 9 competent and 3 partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases.
While not inconsiderable, the percentage of end-of-life decisions was lower for children than for adults and newborn infants. Most children are not considered to be able to participate in the decision-making process. Decisions are generally discussed with parents and other caregivers and, if possible, with the child.

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    • "Although, according to Freyer (2004), a child older than 10 years has the capacity for EOL decision-making, parents in some cultures prevent children from knowing of their terminal condition in order to protect the child (Liben et al., 2008). In a study conducted in the Netherlands, only 36% of children participated in their EOL decisions (Vrakking et al., 2005). In Asian culture, it is commonly believed that telling patients they are at the EOL is like declaring a death sentence and patients will give up all hope of living (Liben et al.; Sherman, 2006). "
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